This is just something I found online, that I thought might be interesting to share :) This is 30 things about my illness that you may or may not know :)
1. The illness I live with is: Ehlers-Danlos Syndrome
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: Birth
4. The biggest adjustment I’ve had to make is: I haven't really 'adjusted' my life, because I've lived with the same illness for my whole life, so I've never had to really change anything, but the biggest way I have to 'adjust' to every day life is with my gut - feeding, draining, avoiding a lot of foods.
5. Most people assume: That my illness is 'better' now, when actually my illness has definitely progressed, it's just better managed than when I spent my whole day in bed.
6. The hardest part about mornings are: There isn't time to wait for painkillers to set in or adjust to the morning dizziness I get from sitting/standing up when you have lectures or work to attend. Sometimes I wish the day would just wait for me, to feel a bit more human :)
7. My favourite medical TV show is: I don't really watch that much TV any more since I've been at Uni. I used to watch Holby City quite faithfully though, I think that''s always quite good. Scrubs is really funny, especially when you've worked in the medical profession! :)
8. A gadget I couldn’t live without is: My phone - I can't go a minute without it, and I know it's bad. I just fee like it connects me to the world and without it my Mum thinks I'm dead and I have no idea what everyone had for their lunch!!
9. The hardest part about nights are: My pain and sickness are always worst at nights. In some ways that's better because I don't really have any plans in the night other than sleep. But sleep is important to help me function in the day time. I have so many sleepless nights, not because I'm not tired (I'm one of those people who can sleep on a chickens lip!) but just because I feel so poorly during the night.
10. Each day I take __ pills. I don't even know if my brain is functional enough to count them all. They fluctuate a lot and I have some that I take as and when. Some I take every day because I have to, and others I take according to how much pain I'm in or how sick I feel. Around 25-30 last time I counted.
11. Regarding alternative treatments I: have tried them all probably - special teas, herbal supplements, crystals, reiki, accupuncture, hypnotherapy. If they work for some people that's great :) Accupuncture gave me a little help but not really much different.
12. If I had to choose between an invisible illness or visible I would choose: invisible! a lot of people find it irritating when people say 'oh you don't look sick' or 'oh you're looking well' but largely I'd rather them say that than 'oh, you're looking rough.' I don't want to look rough! On the other hand, when doctors tell me 'you look well' when I feel rough and want them to do something to make me better, this annoys me because it usually means they're trying to find an excuse not to do anything and as a result I carry on feeling like crap. Such is the case now with my feeding tube being broken! I don't care how well I look - it needs fixing! I think it's easier to tell people about it in your own time, when it's invisible. As quite a private person I don't always want people to know straight away. When it's visible, it's the Elephant in the room to the other people until I explain. When it's invisible, I only notice the Elephant myself, and as long as he behaves himself that's ok.
13. Regarding working and career: I'm currently working in administration at my local hospital over the summer to cover uni bills for next year. I'm studying an English Language Degree at the moment and want to go on to do speech and language therapy. My illness doesn't stop me though it makes it very difficult, exhausting and painful sometimes. It's important for me to try my best at these things as much as I can :)
14. People would be surprised to know: Before I fell extremely poorly as a teenager, things like skydiving, swimming with sharks, fast rides, living independently were always things I would have feared. When I fell ill, I watched Jack Osbourne: Adrenaline Junkie a lot and he did loads a lot with people who had problems in their lives and he'd also had a lot of problems himself. It inspired me to sort of build some really big aims and given my situation at the time I found this longing to do all these big exciting things. If you know me now, other than being a bit of a pussy with heights (which I really want to get over!) I'm more of an adrenaline junkie.
15. The hardest thing to accept about my new reality has been: I don't really have a new reality, but I suppose since diagnosis... that EDS is incurable? It wasn't too hard too accept because since I'd been ill for so long, I never expected it to be anything with an easy fix. For the last 5 or 6 years I've sort of felt that I have what I have - whatever will be, is how it will be.
16. Something I never thought I could do with my illness that I did was: talk about it to people? I always used to tell people I'd just broken my leg or something. I'm better at talking about it now. As a child I HATED my friends knowing that I was different. Like most children I just wanted to fit in. An old lady down the road 'outted me' to my friends at the park when I was having a water fight by saying 'How are you now? I know you're quite poorly' and she often asked my friends how I was even before that, and most of them didn't really know what was happening and I didn't want them to. So I'm much more open about it these days, though I still worry about how I'll be recieved.
17. The commercials about my illness: Like posters? They all say EDS is about being bendy and it just isn't. A lot of people with type three 'only' suffer with their joints - still pretty nasty and requires surgery and intense physiotherapy but for someone who suffers so severely with an impaired GI tract, it's really frustrating when you tell people 'I have EDS' and they Google it and all they get is information about dislocations.
18. Something I really miss doing since I was diagnosed is: I do all the same things I did since before I was diagnosed :) That's the way genetic illnesses work - you don't just get sick with a diagnosis - a diagnosis brings you both a sentence, and help!
19. It was really hard to have to give up: Giving up all the active things when I was a kid. I always felt like I was admitting defeat when I took notes in to skip P.E, and truth be told I didn't always give them in, because it was my favourite. I loved playing basketball several times a week and it broke my heart to have to stop.
20. A new hobby I have taken up since my diagnosis is: Sewing! I run my own small charity, making different accessories for children and adults with medical problems and I love it :) I made a few 'wiggly bags' (to protect Hickman lines)- before I had my own tube fitted, and then I realised the importance and need for it all when I had my feeding tube fitted and so myself and my friend Nada, expanded it into a charity called Team Tubey.
21. If I could have one day of feeling normal I would: Go out to a restaurant and just pick ANYTHING I wanted off the menu. I could read all of it an eat anything :)
22. My illness has taught me: Not to take things for granted. Everything is so beautiful when you are taught just how precious it is. When you have so much taken away from you, you have a great appreciation for everything you do have and the magic of life is multiplied :)
23. Want to know a secret? One thing people say that gets under my skin is: When people tell me I can't or shouldn't do something. When people try to tell me what's best. If I ask for advice then I don't mind but 'your health comes first' is probably the biggest pet peeve of mine. My life comes first - that's my health, education, social time, work, exercise etc. Sometimes working makes me ill, probably even exhausts me into hospital - but that's my decision to make. If I spend all my time keeping myself well by not living my life, I have to ask you what the point is in that?
24. But I love it when people: Appreciate all the things I'm doing DESPITE my illness. Because then I know I'm winning and it's not beating me.
25. My favourite motto, scripture, quote that gets me through tough times is: Oh gosh. There's so many over-used awful cheesy quotes out there. There's a lyric from a My Favorite Highway song called 'Nothing's Bigger Than Love' - the whole song speaks to me, but I use the line 'If there's a hole in your heart, you've got to pull it together' quite a lot. I really like it :)
26. When someone is diagnosed I’d like to tell them: Hang in there. A diagnosis doesn't cure you and it doesn't take the pain away but there's a good chance things will get a little better now you know what you're dealing with. Having EDS doesn't change anything :) Set yourself some goals and embrace your achievements :)
27. Something that has surprised me about living with an illness is: I feel exactly the same as everyone else. I know everyone else doesn't feel pain, or sickness like me and I know they don't have to work their lives around something like Ehlers-Danlos, but they watch the same TV shows, read the same books, have hobbies like mine, have hopes and dreams for the future. They have little pet peeves just like I do, they get upset or happy or laugh at things just the same :) I don't feel any different.
28. The nicest thing someone did for me when I wasn’t feeling well was: Aw so many lovely things. It always feels really lovely when someone visits you in hospitals :) Hospitals are really grim places and it's not that much fun coming to visit but it's always great fun. Becca once knocked on my door and drove off but left some flowers on my doorstep. I won't forget that :) People have brought me some lovely things while I've been ill - Danny brought me a really beautiful Disney Mulan doll, because I love Mulan. Sam always hides messages for me to find when I'm ill, which is cute, and buys me flowers :) When I was really ill Sarah wrote to me every couple of weeks without expecting a letter in return and it brightened my day so much just to know someone was thinking of me, and would take the time out of their day to do that. My friends make me cups of tea and hot water bottles and it makes me feel so loved <3 I can't pick just one thing because I've had so many :) It's so nice to get a hug off someone when I'm not feeling well - I think that's one of the nicest things you can do for someone to show them you care.
29. I’m involved with Ehlers Danlos Awareness Month because: Awareness is so important to get EDS recognised for what it really is. There's many more common illnesses out there that everyone knows exist. Most people have never heard of EDS and those that have don't understand the half of it.
30. The fact that you read this list makes me feel: Positive - If you've learned anything from it or found it interesting then I've achieved what I wanted to :)
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